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    Bowler Purely for tax reasons 🀩
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
    Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

    ​

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      Originally posted by Ellie View Post
      Bowler Purely for tax reasons 🀩
      πŸ˜‚πŸ˜‚πŸ˜‚ good answer

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        Denise, sending a hug. I hope Stephen and you, get the care he deserves xxx

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          denise just catching up…I’m so sorry to hear about all the hospital stress! I hope you can rest a little, knowing that Stephen is being looked after.

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            Afternoon everyone hope we are all okay and enjoying/surviving the heat ? X
            Foxes Never Quit πŸ’™

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              Hospital visit was ok. I couldn't visit before or go into the hospital with him as there was no room. It was so busy.

              Hes in a room with a very annoying patient who makes a lot of noise and shouts for attention. The ward has nothing to do with his illnesses I think they just found a space. Theres no TV so Stephen just lies there. He cant read or use a phone because he cant use his hands. I gave him his dinner and we sort of had a chat. Horrible when I had to leave, he asked me to get his clothes so he could go home with me. The nurses are wonderful but I don't think this environment will do him any good.

              They are looking for a residential home so he can be assessed for a nursing/care home. The hospital OT said about getting 4 x carer visits a day but the environment isnt good for him. Social worker has emailed her evidence but there are 2 computer systems in the hospital πŸ€·β€β™€οΈ and as I had no equipment and no room for it and lots of stairs. I told her it just wouldn't work. I've done the best I can and its added to his health problems.

              So I'm on a guilt trip and I'm having nightmares. I'm so tired I keep falling asleep but I dream I cant find him and I don't know where he is. I'm sure it will get better and when I know hes safe and comfortable I will be happy.

              I need a hug.
              when i can think of something profound i will update this.

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                Oh Denise, lots and lots of hugs for you and all needing some. No wonder you’re so tired, you have looked after Stephan as much as you possibly could and much beyond that point. Do hope they find somewhere suitable very soon so you can relax a bit, as you sound the priority now xx
                Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                  Thanks Heather R good news is finally, after months of trying a huge box of nappies has arrived. Enough to last until November. Where the hell am I going to put them? When hes settled I'm going to drop them off. What worries me is accompanying paperwork says it's not a complete order. Me thinks no one will be able to get in the flats!

                  I'm so hot. My bum leaves a big wet patch behind when I get up. My cats look like they have all fainted. - because of the heat not my wet bum before anyone says anything.
                  😊

                  when i can think of something profound i will update this.

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                    They've moved him again. πŸ€·β€β™€οΈ
                    when i can think of something profound i will update this.

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                      denise keep talking to us, we are listening and sending you those much needed hugs πŸ€—πŸ€—πŸ€—
                      Stay strong πŸ’ͺ
                      Started limping 2017, diagnosed August 2021. Wheelchair user and reduced shoulder function. Trying to be positive 😺.

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                        denise you must be in mental melt down. Stephen is safe and I know he hasn't got his creature comforts but he his safe.

                        There is only one way forward re stephens care and let's hope it can happen soon.

                        In the meantime you must look after you. I feel so upset for you. Xx
                        Diagnosed May 2021 bulbar onset als.

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                          Thanks everyone. Its when I wake up and the other bed is empty and he wont come back here again. 😞
                          when i can think of something profound i will update this.

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                            ❀️ Thinking of you Denise xx
                            Diagnosed July 2020, ALS bulbar onset. PEG and ventilator (mainly at night), and pretty poor speech, but legs still about functioning!

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                              I didn't get back to sleep. No doubt I will be falling asleep again this afternoon which will mean I have problems again tomorrow. It was rather warm last night. πŸ₯΅
                              when i can think of something profound i will update this.

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                                An evening check-in 😘😘

                                We've had visitors staying over, which was lovely as I can't travel to see them, but it's nice to have a quiet house again 😬
                                ​Diagnosed 03/2007. Sporadic Definite ALS/MND Spinal (hand) Onset.
                                Eye gaze user - No functional limbs - No speech - Feeding tube - Overnight NIV.

                                ​

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